I welcome the chance to share my views on and experience of the move from disability living allowance to PIP. I have not yet moved to PIP; I am awaiting word on when I will be reassessed for it. It may seem odd that I focus on transport and mobility but, as I hope I will make clear, that is where I will feel the issues most keenly. I am lucky. I currently have an indefinite award of DLA at the higher rate for mobility, and I think that it will be next year before I am reassessed for PIP. I am already terrified of what that might mean.
I am disabled. I am lucky; there are many in a worse position than me. I have been disabled to differing degrees since childhood. I had my first surgery at the age of 11 and have undergone numerous surgeries to put pins and plates in my hips and pelvis. I have had hip replacements and I will be due for another set at some point very soon. I have had a disc removed from my back, which has partly led to osteoarthritis throughout my body, from head to toe, affecting my back, hips, neck, shoulders, ankles and hands. It is everywhere, and obviously I take a lot of medication for all of that.
My condition is variable. I have a normal, underlying level of pain that is there every day. If it is particularly bad, I can be completely incapacitated and unable to get out of bed because of back spasms. It has also affected my activity. If I force myself to do something, the likelihood is that I will pay for it soon after. That increases pain and a seizing up of all the joints. However, I try to live as normal a life as possible. I work full time and have done so for most of my life since I left university. My family and friends help me to complete daily tasks and to live as full a life as I can.
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I start the day early. I take my painkillers and wait for them to kick in before I start the slow process of washing, for which I have a seat in my bath, and dressing, which can take a while. However, I build that into what I do every day in my life. It can take me up to three hours to be ready to leave the house. I deal with that every day before I go to work—but I do it and I go to work.
Sometimes, on a bad day, I cannot drive because of the pain, but I am very lucky that my father is able to drive me. I will get him to drive me to work rather than take a day off. I am usually in pain to a greater or lesser degree, but it would be awful to let that stop me doing anything.
What do I think the changes would mean for me? My first thought is about what I understood the purpose of DLA to be. I understood that it was a payment that was meant to offset the increased costs that I incur because I am disabled—that it was a way to level the playing field. Those costs could result because I pay someone to do my ironing for me, because I seem to damage shoes quickly because of the way that I walk and trip or because I cannot walk any useful distance and will incur higher transport costs, for example. That is the focus of my payment, as I receive the higher rate for mobility, but nothing for the care component.
I choose to use my allowance to fund a car under the Motability scheme. Because of my disability, I need a car with a high seating position, and I feel that, as I drive a lot, especially to get to work and on holidays in the Highlands and Islands—they are easier than trying to negotiate airports and make arrangements to go overseas—I can justify driving a four-wheel drive vehicle. After all, when it snows, I cannot leave the car and walk away.
The DLA covers only the cost of a standard car, of course. Working allows me to pay the advance payments that are required to get the car that I want. Over the years, I have paid thousands of pounds to lease the cars that I have wanted. It is disappointing that some seem to believe that I am given that car, and that such reactions appear to be behind a crackdown and a decision to reduce the payments of DLA. Would it be more acceptable if we went back to the days when I would have been given an invalid carriage that would not suit my needs as an individual?
My award of DLA at the higher rate for mobility is also a passport to get me my blue badge, and I have an allocated disabled space in the car park beside my house. I do not receive any other benefits—financial or otherwise. The blue badge and the disabled space are invaluable in allowing me to live a normal life. There is allocated blue badge parking at my workplace, so I can continue to work and contribute to society by paying my taxes, which in turn pay for my DLA. I believe that there is a net benefit to society and Government funds in my working as opposed to my not working and claiming unemployment benefits. Rough calculations will show that the net gain to the state of my working is around £5,000 per annum. I will detail that at the end of my statement.
Why am I scared by the introduction of PIP? The qualifying criteria have changed and, despite the years of clear evidence—I do not know how I could have faked my X-rays, and I am sure that the surgeons were not operating for fun—I fear that I will no longer be considered eligible. I can walk a bit on most days and sometimes further than the new limit, but the 20m is a pointless distance. What am I supposed to be able to achieve by walking that distance? On some days, every step is agony, but I keep going and walk the distances that I have to walk between my house and my car and between my car and my workplace.
I can do a bit around the supermarket, although I cannot go shopping as some do, as a leisure activity. I can get around a shop and that is enough—I will pay for that with pain later—but even then, my elderly father carries the shopping for me. Is the fact that I can usually walk 20m, though in pain, supposed to indicate somehow that I can live normally and walk the same distances that non-disabled people can?
My fear is informed by the fight that I had to be awarded DLA in the first place. I was turned down. I appealed; I was awarded it for a year. I reapplied; I was turned down. I appealed; it was awarded for a year. I reapplied; I was turned down. I appealed; it was awarded for three years. Eventually, it was made an indefinite award.
Here I go again. Am I on the same cycle? Some medical conditions will improve, but I am unlikely to grow a new skeleton. Why cannot those of us with indefinite awards and conditions that will not improve just be transferred over to the equivalent PIP status? A lot of time, effort and money will be spent assessing people who it is perfectly obvious will always be entitled to PIP.
It almost seems that I would be better giving up. Should I decide that I cannot handle any of the pain and sit in a wheelchair, doped up with painkillers, for the rest of my life? That does not seem sensible. I would have the added access hassle that that would bring, my health would suffer and society would lose the product of my work and taxes. Surely it is better that I do as much as I possibly can, weighing up for myself the costs and benefits on good and bad days of what I do? One good day I might walk further with my nephew to take him somewhere and then spend a few days in utter agony, but surely that is better than deciding that I can never do anything. Even then, I can achieve only those small things because of my Motability car and my blue badge.
What would my life be like without my DLA or PIP and without my Motability car and blue badge? It would be awful. I would no longer be able to work. I would find it almost impossible to use the public transport from my house to work, because even the walk to or from the bus stop is likely to be too far. Furthermore, if I have to stand and wait, I might not then be able to board the bus. Indeed, standing is worse than walking. There are also timing issues, which would mean an even earlier start in the morning.
Without my car and the allocated parking space I would be almost housebound. That would mean relying on taxis—but how would I pay for them without DLA or working?—and the kindness of others. I would lose my independence—and I am fiercely independent.
I am single, with no children. Who am I supposed to rely on? I could work and pay for a private car, although it is unlikely to be as suitable. However, if I cannot park near enough to my house or my work, what am I supposed to do? Should I say goodbye to socialising as I cannot get close enough to the venue? Should I never do my own shopping if the walk from the car park is more than I can manage?
So I am terrified. I cannot see how my life can continue as it is if I lose my DLA at the higher rate for mobility. Do I think about whether life would be worth it? The honest answer is yes. I have contemplated ending things if I do not receive PIP at the rate that would allow me to continue to have my Motability car and blue badge. For me, it is all or nothing, because I do not qualify for any care payment.
I also fear that those who are making the decisions confuse the fit-to-work tests with the PIP assessment. I am clearly able to work, and I have worked most of my adult life. That does not mean that I am not disabled and that I do not incur additional costs because of that disability or do not need some special arrangements to allow me to live my life.
I am also gravely concerned about the many others in the same situation, who are terrified of losing their benefits and losing hope when they are refused PIP. I fear that there will be an increase in extreme poverty among the disabled, but do not worry, you will not see it, because they will all be stuck indoors. I fear that there will be an increase in suicide among the disabled.
I am lucky—I am literate and able to understand the forms and questions. There are others who the changes will just happen to, who will be too nervous to complain or make a fuss and who will accept that the decision of the state must be correct.
As an experiment, get a pedometer or similar, stand at your front door and then walk 20m. Is that enough to get you where you need to be? Park as normal at the supermarket and walk 20m. Have you even reached the door yet? Does the fact that someone can struggle and walk 20m mean that they do not have a mobility disability? I think not. Surely it is easier for someone in a wheelchair to go further than someone who walks but in pain.
I am one of the hard-working majority, yet I am made to feel like some terrible scrounger or that I am claiming something under false pretences. The stress is awful. Trust me, I would rather not be in pain and not claim DLA or PIP. I live as well as I can and, over the years, have found various ways of making it easier to gauge how much pain something is likely to cause. No one else will realistically be able to measure the pain that I feel, the compromises that I make or the decisions that I take, but the evidence that I am disabled is clear in my medical records.
What should I do? Continue as I am, planning and making decisions based on my knowledge and experience, keep working and contributing; or give up, stop work and be in a wheelchair before the PIP assessment comes along? I know which I want to do and which is best for me and society, but PIP reassessment makes it seem better to go the other way. Unfortunately, one day I may well be wheelchair bound and even less able than I am today. I would rather put that day off as long as I can.
I have calculated what it would cost the state if I did not receive PIP and had to give up work. If I keep getting DLA or PIP, working and, therefore, paying my tax and national insurance, there will be a net gain to the state and taxpayer of around £5,000 per annum, because I pay around £7,800 in tax and national insurance and DLA is just under £3,000 for the year.
If I lose DLA or PIP and have to give up work, there will be a net loss of around £11,500 per annum, which would be significant if I were to work for another 20-odd years. That comes from the loss of approximately £7,800 in tax and national insurance and the payment to me of income support, which would be at least £3,765 at the basic level.
If I could not work because of access issues through loss of DLA—the loss of my blue badge and car—I would presumably receive at least £72.40 per week in benefit, which is more than the cost of providing me with DLA and allowing me to contribute to society. Even looking at it as just swapping DLA for income support and ignoring the tax and national insurance, it is a loss to the state and taxpayer of around £800 per annum. I have given some details in my written submission. Therefore, the net gain to the state is around £5,000 per annum. I understand that that also pays for the NHS and other services.
Being able to walk 20m is not a sufficient criterion to say that I am not disabled and not entitled. I hope that the review helps you in your deliberations and that, somehow, something can be done.